Insights

Strong Research Focus The FSHD Society is dedicated to accelerating treatments and a cure for FSHD, presenting opportunities to introduce organizations specializing in biopharmaceutical, genetic testing, and clinical research solutions that support disease-specific research initiatives.

Global Partnership Engagement With recent collaborations involving Lumiio, Fulcrum Therapeutics, and international projects like Project Mercury and Walk & Roll, there is a clear openness to forming strategic partnerships, making it ideal for sales efforts related to healthcare technologies, event management platforms, and patient engagement tools.

Digital Outreach Capabilities The organization’s use of diverse digital tools and recent online campaigns highlight its active digital presence. This presents opportunities to offer digital marketing, analytics, and telehealth solutions tailored to nonprofit and research organizations.

Funding Growth Potential Although current revenue is modest, the organization’s engagement in expanding research and clinical programs indicates potential for growth in grant management, fundraising platforms, and donor engagement solutions aimed at resource expansion.

Innovative Clinical Initiatives Launch of genetic testing programs and partnerships for data integration suggest demand for innovative healthcare technologies, clinical data management, and patient diagnostic solutions to support their cutting-edge research and diagnostic efforts.

FSHD Society Tech Stack

FSHD Society uses 8 technology products and services including Facebook Pixel, RSS, oEmbed, and more. Explore FSHD Society's tech stack below.

  • Facebook Pixel
    Analytics
  • RSS
    Content Management System
  • oEmbed
    Dev Tools
  • AMP
    Javascript Frameworks
  • JSON-LD
    Javascript Frameworks
  • GTranslate
    Web Platform Extensions
  • WP-PageNavi
    Web Platform Extensions
  • FitVids.js
    Web Tools And Plugins

Media & News

FSHD Society's Email Address Formats

FSHD Society uses at least 2 format(s):
FSHD Society Email FormatsExamplePercentage
First.Last@fshsociety.orgJohn.Doe@fshsociety.org
52%
FirstLast@fshsociety.orgJohnDoe@fshsociety.org
32%
Last@fshsociety.orgDoe@fshsociety.org
12%
FLast@fshsociety.orgJDoe@fshsociety.org
2%
FirLast@fshsociety.orgJohDoe@fshsociety.org
2%
First.Last@fshdsociety.orgJohn.Doe@fshdsociety.org
62%
FirstLast@fshdsociety.orgJohnDoe@fshdsociety.org
23%
First.Last@fshdsociety.orgJohn.Doe@fshdsociety.org
7%
First.Last@fshdsociety.orgJohn.Doe@fshdsociety.org
8%

Frequently Asked Questions

Where is FSHD Society's headquarters located?

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FSHD Society's main headquarters is located at Massachusetts United States. The company has employees across 4 continents, including North AmericaAsiaEurope.

What is FSHD Society's phone number?

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You can contact FSHD Society's main corporate office by phone at . For more prospecting data, LeadIQ has access to up-to-date and accurate contact information within our platform. Find, capture, and sync contact data to your CRM and sales tools in one click.

What is FSHD Society's official website and social media links?

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FSHD Society's official website is fshdsociety.org and has social profiles on LinkedIn.

What is FSHD Society's NAICS code?

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FSHD Society's NAICS code is 8132 - Grantmaking and Giving Services.

How many employees does FSHD Society have currently?

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As of February 2026, FSHD Society has approximately 54 employees across 4 continents, including North AmericaAsiaEurope. Key team members include Chief Operating Officer: K. K.Chief Scientific Officer: L. R.Chief Community Engagement Officer: B. J.. Explore FSHD Society's employee directory with LeadIQ.

What industry does FSHD Society belong to?

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FSHD Society operates in the Philanthropic Fundraising Services industry.

What technology does FSHD Society use?

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FSHD Society's tech stack includes Facebook PixelRSSoEmbedAMPJSON-LDGTranslateWP-PageNaviFitVids.js.

What is FSHD Society's email format?

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FSHD Society's email format typically follows the pattern of First.Last@fshsociety.org. Find more FSHD Society email formats with LeadIQ.

When was FSHD Society founded?

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FSHD Society was founded in 1991.

FSHD Society

Philanthropic Fundraising ServicesMassachusetts, United States51-200 Employees

The FSHD Society is the world’s largest research-focused patient organization for facioscapulohumeral muscular dystrophy (FSHD), one of the most prevalent forms of muscular dystrophy. We have catalyzed major advancements and are accelerating the development of treatments and a cure to end the pain, disability, and suffering endured by one million people worldwide who live with FSHD. The FSHD Society has transformed the landscape for FSHD research, and is committed to making sure that no one faces this disease alone.

Our Vision: A world free of the suffering caused by Facioscapulohumeral Muscular Dystrophy (FSHD)
 
Our Mission: Find treatments and a cure for FSHD while empowering our families
 
Our Strategies:
- Accelerate the development of treatments and a cure for FSHD
- Increase, engage, and empower our stakeholders
- Aggressively leverage and expand resources to support our Mission
 
Our Core Values: Research | Community | Urgency

Section iconCompany Overview

Headquarters
Massachusetts United States
Phone number
NAICS Code
8132 - Grantmaking and Giving Services
Founded
1991
Employees
51-200

Section iconFunding & Financials

  • $1M

    FSHD Society's revenue is estimated to be in the range of $1M

Section iconFunding & Financials

  • $1M

    FSHD Society's revenue is estimated to be in the range of $1M

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